November 7, 2007

Family & friends:

Trisha and I want to thank you for your prayers and unbelievable support. This has been the hardest week of our life. Since we learned the newest Larson has a heart defect, we have been back to the doctor twice; once to the perinatologist for the amniocentesis, and once to the Cardiologist at CHOC for ultrasound. The amniocentesis result will confirm whether or not a genetic defect is present (1st trimester blood test was negative). Results are due next week. The cardiologist provided us with a diagnosis of "Tetrology of Fallot Pulmonary Atresia Ventricular Septal Defect." In english, the pulminary arteries are not visable on ultrasound (could be there--just too small to see now), the vessel from the right ventrical to the pulmonary artery is not there, and there is a defect in the septum which separates the right ventrical from the left. This is not a rock solid diagnosis, because the anatomy of the heart is so tiny right now. We are going back in early January for another ultrasound & hope to get a more definitive diagnosis. We were told that the most accurate diagnosis will come once the baby is delivered.

We are expected to have an otherwise normal pregnancy (closely monitored by perinatologist), and a normal delivery (c-section not required). We will likely deliver @ St. Joseph/CHOC in Orange sometime in March. The baby is expected to go directly to NICU for final diagnosis with possible heart surgery the first week. The baby is then expected to spend 2-4 weeks in the NICU before returning home. Repair for this condition will require multiple surgeries. The next surgery will likely be within the first year--probably 6-8 months. Travel to Stanford to a surgeon who specializes in this condition is expected. Along with several other anatomy elements to be repaired, this condition requires a "conduit," which is a tube with a valve in it. It will have to be replaced to keep up with the size of the heart. It will also have to be maintained if/when it calcifies. As for survival odds--we don't know yet. That depends almost entirely on the anatomy of the heart which cannot be seen as well in utero. The pending genetic test outcome will also drive the survival odds. This all sounds really negative, but there is hope! Our cardiologist says patients can lead a normal life after this type of repair. Also, the article below indicates, "In patients with operable pulmonary arteries, survival rates with satisfactory quality of life now reach 90%." The doctor at Stanford has had experience doing surgery where the pulmonary arteries are diminutive.

Please continue to pray for the baby, and for our family. Please pray for God to give us wisdom to make the right choices for doctors/hospitals.

With Love,

Erik & Trisha